{"id":453,"date":"2022-02-09T13:53:21","date_gmt":"2022-02-09T12:53:21","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=expert-centers&#038;p=453"},"modified":"2022-03-14T10:38:34","modified_gmt":"2022-03-14T09:38:34","slug":"ern-ithaca-gdansk-center","status":"publish","type":"expert-centers","link":"https:\/\/ern-ithaca.eu\/es\/about-us\/expert-centers\/ern-ithaca-gdansk-center\/","title":{"rendered":"ERN-ITHACA \u2013 Centro de Gdansk"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1900\" height=\"1067\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/lm-1900x1067.jpg\" alt=\"\" class=\"wp-image-1633\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/lm-1900x1067.jpg 1900w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/lm-600x337.jpg 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/lm-768x431.jpg 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/lm-1536x863.jpg 1536w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/lm-2048x1151.jpg 2048w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/lm-1320x742.jpg 1320w\" sizes=\"auto, (max-width: 1900px) 100vw, 1900px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Centro Cl\u00ednico Universitario de Gdansk, Polonia<\/strong><br>Centro de Enfermedades Raras, adscrito al Departamento de Pediatr\u00eda, Hematolog\u00eda y Oncolog\u00eda y a la Cl\u00ednica de Gen\u00e9tica<br>Ul. D\u0119binki, 7<br>80-952 Gda\u0144sk, <br>POLONIA<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link\" href=\"https:\/\/uck.pl\/\" target=\"_blank\" rel=\"noreferrer noopener\">P\u00e1gina web<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:26px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"lead\">Plomo<\/h2>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:15%\">\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"260\" height=\"261\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/beata.jpg\" alt=\"\" class=\"wp-image-1626\"\/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-vertically-aligned-center is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:85%\">\n<p class=\"wp-block-paragraph\"><strong>Prof. Dra. Jolanta Wierzba<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Tel\u00e9fono<\/strong>: 00 48 58 34 929 48<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Fax<\/strong>: 00 48 59 34 929 50<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Correo electr\u00f3nico:<\/strong> chorobyrzadkie@uck.gda.pl<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/03\/karolina-1.jpg\" alt=\"\" class=\"wp-image-1630\" width=\"121\" height=\"150\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/03\/karolina-1.jpg 1359w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/03\/karolina-1-483x600.jpg 483w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/03\/karolina-1-768x954.jpg 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/03\/karolina-1-1236x1536.jpg 1236w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/03\/karolina-1-1320x1641.jpg 1320w\" sizes=\"auto, (max-width: 121px) 100vw, 121px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"wp-block-paragraph\"><strong>Prof. Dra. Beata Lipska Zi\u0119tkiewicz<\/strong><\/p>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/dd.jpg\" alt=\"\" class=\"wp-image-1632\" width=\"129\" height=\"165\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/dd.jpg 757w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2022\/02\/dd-469x600.jpg 469w\" sizes=\"auto, (max-width: 129px) 100vw, 129px\" \/><\/figure>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"wp-block-paragraph\"><strong>Dra. Karolina \u015aledzi\u0144ska<\/strong><\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"scope\">\u00c1mbito de aplicaci\u00f3n<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">El \u00e1mbito de especializaci\u00f3n de nuestro centro, como miembro de la Red Europea de Referencia (ERN) ITHACA, abarca todos los s\u00edndromes que presentan anomal\u00edas del desarrollo y\/o discapacidad intelectual (DI). Aproximadamente 1 de cada 40 reci\u00e9n nacidos presenta una malformaci\u00f3n cong\u00e9nita (261 de cada 10 000 fetos y reci\u00e9n nacidos seg\u00fan los informes de EuroCAT), y 1 de cada 40 presenta DI. Por lo tanto, entre 3 y 5 % de todos los nacimientos humanos presentan o desarrollar\u00e1n una anomal\u00eda del desarrollo, de las cuales al menos entre 25 y 50 % son de origen gen\u00e9tico o gen\u00f3mico. Esta enorme poblaci\u00f3n representa, en realidad, la yuxtaposici\u00f3n de un n\u00famero muy elevado de trastornos que, considerados individualmente, son raros y que presentan una diversidad extrema de causas y fenotipos. La competencia y el \u00e1mbito de especializaci\u00f3n de este centro ITHACA incluyen:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>m\u00e1s de 5.500 s\u00edndromes dism\u00f3rficos y de anomal\u00edas cong\u00e9nitas m\u00faltiples (MCA) (recogidos en la Base de Datos de Dismorfolog\u00eda de Londres), entre los que se incluyen m\u00e1s de 3.000 enfermedades monog\u00e9nicas, todas las anomal\u00edas cromos\u00f3micas (la mayor\u00eda de ellas solo detectables mediante tecnolog\u00edas de microarrays), anomal\u00edas dism\u00f3rficas multifactoriales y espor\u00e1dicas, y embriopat\u00edas de origen ambiental<\/li><li>&gt;1.500 formas monog\u00e9nicas y cientos de formas cromos\u00f3micas de discapacidad intelectual, con o sin trastorno del espectro autista (TEA) asociado*<\/li><\/ul>\n\n\n\n<div style=\"height:26px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"service-to-patients\">Atenci\u00f3n a los pacientes<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">El objetivo del Centro de Enfermedades Raras (RDC) es proporcionar una atenci\u00f3n m\u00e9dica multidisciplinar coordinada a las personas con enfermedades raras, teniendo en cuenta las necesidades individuales del paciente y de su familia. El Centro atiende determinadas enfermedades raras en ni\u00f1os mediante ingresos hospitalarios y atenci\u00f3n ambulatoria. Durante las visitas breves, proporcionamos atenci\u00f3n multidisciplinar de acuerdo con directrices espec\u00edficas y especializadas, con el fin de mejorar la calidad de vida de los pacientes y, en la medida de lo posible, su tratamiento.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Actualmente estamos poniendo en marcha procedimientos piloto para la transici\u00f3n asistencial de la infancia a la edad adulta.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El RDS, como parte de un hospital altamente especializado, puede ofrecer la atenci\u00f3n de neur\u00f3logos, endocrin\u00f3logos, cirujanos, cardi\u00f3logos, oftalm\u00f3logos, otorrinolaring\u00f3logos y nefr\u00f3logos. El equipo del RDS cuenta con 5 genetistas cl\u00ednicos y 4 residentes que participan en las consultas gen\u00e9ticas para los ni\u00f1os y sus familias. Todos los pacientes reciben la informaci\u00f3n escrita necesaria sobre su enfermedad espec\u00edfica, adem\u00e1s de datos adicionales sobre las asociaciones de pacientes y los ensayos cl\u00ednicos disponibles. Mantenemos contacto con la mayor\u00eda de las asociaciones de pacientes polacas y organizamos conferencias y talleres conjuntos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Hay cuatro departamentos de pediatr\u00eda que forman parte de las redes ERN (ERNICA, PaedCan, ERKnet y E-urogen). Adem\u00e1s, cuentan con especialistas en fisioterapia, terapia ocupacional, psic\u00f3logos, logopedas, trabajadores sociales, etc.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La mayor\u00eda de los especialistas de la UCC son, al mismo tiempo, profesores e investigadores de la Universidad de Medicina de Gdansk.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">&nbsp;Las completas instalaciones de diagn\u00f3stico por imagen y de laboratorio para ni\u00f1os permiten realizar las <em>diagn\u00f3stico<\/em> y los procedimientos de consulta necesarios para una determinada enfermedad, as\u00ed como para determinar los pasos a seguir, incluyendo la rehabilitaci\u00f3n y la atenci\u00f3n psicol\u00f3gica. El Centro presta asistencia en determinadas \u00e1reas relacionadas con las enfermedades raras, en las que cuenta con competencias espec\u00edficas derivadas de los conocimientos adquiridos y la experiencia cl\u00ednica, la colaboraci\u00f3n con asociaciones de pacientes y la participaci\u00f3n en proyectos de investigaci\u00f3n y congresos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Las cl\u00ednicas participan de forma individual en ensayos cl\u00ednicos y aplican terapias espec\u00edficas. Como uno de los primeros centros del pa\u00eds, el RDS tambi\u00e9n ofrece atenci\u00f3n personalizada a domicilio, aprovechando las posibilidades que brindan la plataforma digital y la telemedicina. La UCC tambi\u00e9n imparte una amplia formaci\u00f3n a las familias y a las personas que participan en el cuidado de un paciente con una enfermedad rara.<\/p>\n\n\n\n<div style=\"height:26px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"organization-of-the-ithaca-ern-name-of-the-center-center\">Organizaci\u00f3n del centro<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">El Centro M\u00e9dico Universitario de Gdansk es uno de los hospitales m\u00e1s grandes de Polonia y   cuenta con m\u00e1s de 1.100 camas disponibles,\u00a0 4.600  empleados, 128.000 ingresos al a\u00f1o (22.000 hospitalizaciones infantiles) y unas 350.000 consultas en los servicios de atenci\u00f3n ambulatoria (500.000 consultas infantiles), adem\u00e1s de 75 a\u00f1os de tradici\u00f3n. El Centro M\u00e9dico Universitario de Gdansk ofrece  una atenci\u00f3n integral en todas las especialidades m\u00e9dicas, incluidos procedimientos altamente especializados. El Centro cuenta  con los recursos necesarios, con un n\u00famero adecuado de quir\u00f3fanos, unidades de cuidados intensivos y salas de aislamiento, as\u00ed como con un gran  n\u00famero de especialistas altamente cualificados. Presta servicio a aproximadamente 3  millones de habitantes.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El LGK (Laboratorio de Gen\u00e9tica Cl\u00ednica), nuestro laboratorio acreditado y con certificaci\u00f3n internacional, propiedad del distrito hospitalario, realiza todas las pruebas citogen\u00e9ticas necesarias, as\u00ed como una serie de pruebas moleculares, entre las que se incluyen el aCGH y determinados paneles gen\u00e9ticos de NGS.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El Centro de Diagn\u00f3stico por Imagen es uno de los centros de diagn\u00f3stico por imagen m\u00e1s grandes de Polonia y sus servicios cuentan con acreditaci\u00f3n completa. Sus servicios (por ejemplo, radiograf\u00edas, tomograf\u00edas, ecograf\u00edas, TAC, resonancias magn\u00e9ticas, gammagraf\u00edas y PET-TAC) cubren las necesidades de todas las especialidades, incluidas las nuestras y aquellas a las que podamos tener que recurrir.<\/p>","protected":false},"featured_media":0,"template":"","tags":[],"country":[66],"center-status":[15],"class_list":["post-453","expert-centers","type-expert-centers","status-publish","hentry","country-poland","center-status-full-member"],"acf":{"name-city":"Gdansk Center","representative":"Dr Beata Lipska","latitude":"54.340022 ","longitude":"18.656845","keywords-search":""},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>ERN-ITHACA \u2013 Gdansk Center - ERN ITHACA<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ern-ithaca.eu\/es\/about-us\/expert-centers\/ern-ithaca-gdansk-center\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ERN-ITHACA \u2013 Gdansk Center - 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